The
Carey family: Micheal and Lisa, with their son Joshua,
continue to fight for reform.

As
Good As It Gets?

The
conditions that led to Jonathan Carey’s death are symptoms
of larger systemic problems within the mental-health industry,
unresolved by his law or the conviction of his killer

By
Catherine Caperello

The
morning sun makes Michael Carey squint as he speaks to the
crowd: “You have to address the problems if you want to see
any changes come about, and that’s what we’re going to do
with the top levels of authority in the state. We’re gonna
see it happen. We’re gonna make it much safer.”

About 300 people have gathered at Elm Avenue Park in Bethlehem
on a September Saturday to listen while Carey—sometimes choking
with emotion—speaks of his son’s life and of the goals of
the Jonathan Carey Foundation, at this, its first walkathon
fundraiser. About 15 to 20 of the volunteers are members of
the Careys’ church, and participants are a mix of friends
and family, but there are many unfamiliar faces as well. Marchers
are invited for lunch and refreshments after the two-and-a-half
mile walk. The pavilion fills with participants who sit down
to a lunch donated by local businesses.

“It
was incredible,” Carey later tells Metroland. With
a throng of supporters marching behind him, “I looked back,
and was just in awe. The string looked like it was a quarter-mile
long; they were stretched out a little bit but, boy, it was
just really—wow.”

Earlier this year, Carey’s son Jonathan died while in the
care of two direct-care workers from the O.D. Heck Developmental
Center in Niskayuna, a facility administered by the state.
The 13-year-old was on a supervised outing when he suffocated
after being restrained by one of the employees. The two workers
drove around for an additional hour and a half before seeking
medical attention for Jonathan. The incident whipped up a
maelstrom of media frenzy, and less than 90 days after Carey’s
death, Gov. Eliot Spitzer had signed Jonathan’s Law.

The New York state Senate Committee on Mental Health and Developmental
Disabilities called a special hearing to evaluate the use
of restraints, training, and communication at facilities run
and licensed by the state Office of Mental Retardation and
Developmental Disabilities. OMRDD oversees service to approximately
140,000 consumers statewide. About 1,500 are served via state-operated
developmental centers like O.D. Heck.

Michael and Lisa Carey, OMRDD Commissioner Diana Jones Ritter,
Commission on Quality of Care and Advocacy for Persons with
Disabilities chair Gary O’Brien, and New York State Association
of Retarded Citizens executive director Marc Brandt are among
those who provided testimony on the use of restraint, communication
with parents and guardians, inconsistencies in training across
various state agencies, a need for psychological profiling
of direct-care workers, and the effect of fatigue and overtime
on quality of care.

The Careys had been fighting for years with state agencies
to obtain access to records related to their son’s treatment
at the Anderson School, a private facility in Dutchess County.
Thanks in part to the intense media attention, state lawmakers
passed legislation that enables parents and legal guardians
to obtain such records. The law mandates that parents or other
qualified individuals, such as legal guardians, must be notified
by telephone of incidents within 24 hours or the facility
will be subject to fines.

The legislation also mandates that facilities must provide
a redacted incident report, meet with the parents, and provide
written reports of actions taken in response to the incidents.
It also grants parents or other qualified individuals access
to redacted records and documents pertaining to allegations
and investigations into patient abuse or mistreatment.

Jonathan’s Law also established a mental-hygiene task force,
which, according to the legislation, is charged with “identifying
the records and reports that are produced with respect to
each patient receiving care and treatment in a mental hygiene
facility or program, examine current disclosure practices
with regard to these materials, and determine whether improved
access to these materials should be legislated. . . . In addition,
the task force shall identify alternative means of sharing
information with parents and legal guardians, such as regular
telephone calls or meetings.”

Jonathan’s Law was amended in July because, as the state interpreted
the legislation, the boy’s treatment records from the Anderson
School would not have been available to his parents, since
the records were dated before the legislation was signed.
To date, neither the task-force report nor the pamphlet disseminating
the rights of parents and guardians has been made available,
and the window of retroactivity for Jonathan’s Law is quickly
coming to a close, expiring on Dec. 31, 2007.

While Jonathan’s Law enables parents and qualified individuals
to more closely monitor the care their child is receiving,
critics say it is completely reactive. Jonathan’s Law specifically
addresses the availability of information after an incident
takes place; critics point out that the law does nothing to
address what causes these incidents in the first place.

Michael and Lisa Carey are no strangers to news cameras. Since
Jonathan’s death, Michael Carey says that he’s become a magnet
for insiders who have complaints about both state and nonprofit
facilities but are reluctant to contact authorities.

“So
many people are afraid to come forward, and it’s because they
either want to stay in their job, they need their job for
the benefits, or they’re afraid if they get fired they won’t
be able to get another job in the field,” he says. “Maybe
they love the field, so sometimes they’re compromising in
a way, but in another way, they want to do something.”

“I
began to hate to hear the words ‘Let it go,’ ” says Marie
Haley. “I was told to let it go so many times.”

Haley didn’t have to worry about losing her job anymore when
she contacted Michael Carey.

She had known the Careys previously; they were members of
the same church in Delmar before Haley and her husband moved
to Schoharie. She was one of the few people who would take
Jonathan and walk with him during church services to give
the Careys some respite. She remembers that the nonverbal
Jonathan would slap his open hands on her belly to say “hello.”

Haley rose in the ranks from direct-care worker to assistant
manager in the residential program in her eight months at
Schoharie County chapter of the Association for Retarded Citizens.
A few months later, she became senior manager, supervising
about 20 direct-care workers in two residential houses. She
decided to call it quits in July of this year, after more
than two years of employment with ARC, citing a general disregard
by the administration toward quality-of-care concerns.

Can’t
let it go: Marie Haley was a former senior manager at
Schoharie ARC.

PHOTO:
Shannon DeCelle

During
her time with Schoharie ARC, Haley alleges that she made numerous
complaints to her supervisors, most of which were ignored.

Haley claims that some of the recurring problems with her
direct-care staff included sleeping during overnight shifts,
temper and aggression issues with “consumers” (the preferred
industry term for mental-health-service clients), falsifying
time sheets, theft, drinking alcohol and more. She says that
her supervisor told her that ARC couldn’t risk losing staff
by being overly critical because “this is as good as it gets.”

Supervision, especially during night shifts, Haley says, was
so lax that employees were able to get away with too much.
“They couldn’t work in Wal-Mart and get away with what they
get away with in the ARC.”

Haley approached her supervisor about an employee who was
temperamental. When confronted about her job, the worker told
Haley to “get her head out of her ass.” Haley’s supervisor
told her to use a behavior plan to address the employee’s
attitude. “The same kind of thing I would use with a retarded
person,” says Haley, who claims that her superior even went
so far as to name a consumer in the house and suggest Haley
implement that person’s plan.

“That
would be inappropriate,” said Anthony Alvarez, CEO of Schoharie
County ARC since 1989. Alvarez emphasizes that it would be
wrong for anyone in his facility to suggest the use of a consumer’s
behavior plan to aid a direct-care worker with emotional issues,
but did not refute that it happened.

Not only did it happen, Haley contends, she even discussed
the issue with a person who she describes as “pretty high
up there, the quality-assurance person right under Alvarez.”

“She
didn’t have much to say about it,” Haley says.

Haley looks physically upset when describing an accident involving
a consumer. Usually her staff will call her at home if they
have a problem, so when she called in late one morning and
the person at the desk said that a consumer had fallen and
may need to see a doctor, Haley became suspicious. She dropped
everything, she says, jumped in her car, and went straight
to the residential house.

“It
was horrible. You can’t imagine what happened.” Haley leans
in and lowers her voice, “It was like something out of CSI.”

She describes how a consumer had gotten herself out of bed
in the middle of the night, unsupervised, and fallen down
a flight of stairs. “She had taken a fire-extinguisher off
the wall with her face.”

Somehow the woman got herself back into her bedroom and put
herself to bed, still bleeding.

“Nobody
heard her fall,” Haley says. “The staff couldn’t tell me anything.”
Two staff members on duty had claimed that they didn’t know
the consumer fell because they were taking a cigarette break
together.

Haley filed a 147 Report form for the incident because she
was the one who dealt with the issue. This is standard procedure.
Such reports are supposed to be sent from the facility to
the Commission on Quality of Care and Advocacy for Persons
with Disability (CQC), and the CQC is charged with reviewing
the internal investigation report.

There are basically two kinds of reports, one for a standard
incident and the other for an incident that directly alleges
abuse. A woman falling down the stairs, even if a result of
staff negligence, does not constitute an act of abuse as defined
in social-services law, a definition that Michael Carey and
other critics feel is too specific and actually violates the
threshold of endangering the welfare of a child.

After review of the internal investigation report provided
by the facility, the CQC makes binary recommendations of either
“indication” or “unfounding.” This means that unless a claim
shows enough evidence of abuse to be indictable, it is unfounded
and the records are sealed. The CQC often will follow up with
a care-and-treatment investigation.

In 2006, according to testimony in a state Senate hearing
after Jonathan Carey’s death, the CQC recommended “unfounding”
in 95 percent of all incidents.

Alvarez explains the reporting process: Once an employee files
a report, the appropriate state oversight agencies are notified.
Unless an anonymous claim is made, he assumes, whoever initially
filed the report would be contacted by the state watchdog
agency as part of the investigation.

Haley says that she was never contacted by CQC investigators,
and because of the highly confidential nature of CQC investigative
actions, it is not possible to know if the claim ever made
it from Schoharie County ARC to the state players.

Haley is critical of the internal investigation, alleging
that it didn’t go far enough, claiming that another staff
member told her that the two on duty had been smoking marijuana
at the time the consumer fell.

“When
I walked in, and I saw that woman, how she looked that night,
I realized all they care about is themselves and their jobs,”
she says. The consumer was eating breakfast, bleeding into
her bowl of cereal.

Ultimately, a memo was issued prohibiting staff from taking
breaks together, and those two workers were fired. But Haley
says they bagged up the linens, cleaned the blood off the
walls and even tried to shower the consumer who fell before
initiating medical attention. These actions and the allegations
of drug use make her believe the incident bordered on criminal
and the authorities should have been involved in a broader
investigation. Since this incident wasn’t deemed “abuse,”
the two fired staff members were free to work at another nonprofit.

Upon her resignation, Haley called and left three messages
for Alvarez, none of which was returned.

Alvarez says that he did not call Haley back because “the
accusations, the allegations she was making at that point
had been investigated, and any recommendations coming out
of those investigations were implemented.” Alvarez insists
that not only are all complaints investigated appropriately
but that Haley would have had access to all the support she
needed in working with her direct-care staff.

“They
did not want to hear it. They did not want to hear my concerns,”
Haley says. “They work very hard to make it look good on the
outside. They try to showcase and there is stuff that’s going
on that’s good; they have good employees but it’s too small
a percentage.”

“There
needs to be more expected of people,” Haley says. “They got
away with way too much, and then when something really bad
would happen, ‘Off with your head!’ ”

Each ARC chapter operates under its own budget, and the NYSARC
state umbrella entity normally makes no financial contribution.
Schoharie ARC, which serves 108 consumers in residential programs,
is funded by an amalgam of public money, with Medicaid as
a top contributor at about 75 percent and the remainder coming
from state vocational and workshop programs. According to
its 2005 IRS 990 filing, Schoharie ARC’s total program service
revenue exceeded $9.7 million.

“The
job starts at $9.27 an hour. You can get a job at Taco Bell
for $10 an hour, so I think maybe you get Taco Bell quality
people working for you,” says Joey Berben, a Family Support
Advocate for Rensselaer County Association for Retarded Citizens.
Berben, a front-line direct-care worker, works in a higher
functioning house than Jonathan Carey would have been placed.
The consumers Berben works with are verbal. They live in their
own apartments and often hold jobs.

Berben was delivering pizzas for a living but had to find
different work after a car accident. He would have never considered
a position with the Rensselaer ARC if not for a friend who
coaxed him to give it a try. At first he recoiled from the
idea of having to shower people or help them go to the bathroom,
but says that he has grown to love it and now wants to turn
that job into a career.

Motivated by employee-incentive programs and tuition assistance,
he can see opportunities for growth in his two years at Rensselaer
ARC. These programs help him to feel like he’s working toward
something in addition to genuinely enjoying the company of
his consumers, whom Berben has come to regard as family.

“Maybe
I’m not making a whole lot of money,” he says. “I feel like
I can make the same amount of money and work in retail somewhere
or in a restaurant, or I can have a job that is rewarding
on multiple levels.”

Berben works the second shift, from 11 AM to 7 PM. Some of
his tasks include taking consumers to the grocery store, to
lunch, to school, work or out to the movies. Berben also administers
medication when necessary.

“I
do feel like a lot of organizations take certain blame for
things when a lot of things are out of their control,” says
Berben. “I feel like it’s kind of hard to control personal
individuals when there are so many people working in an agency.”
It can be exhausting work, and that exhaustion can easily
be translated into a dangerous situation if not checked.

Perhaps this is what led to Jonathan Carey’s death: a dangerous
situation arose from an employee exhausted by working too
much in such a high-stress field.

“Ed
Tirado was working his tenth double-shift in a row the night
he killed Jonathan! It’s unheard of!” exclaims Michael Carey.
“Eight hours with one autistic kid is more than enough, and
then to work 16 hours a day, day after day after day after
day? And I’ve asked the commissioner [of OMRDD] and the governor’s
office to do something right away, and here it is, seven months
after Jonathan’s passed on and to my knowledge there’s zero
changes yet.”

(Edwin Tirado was convicted of manslaughter in the death of
Carey and is scheduled for sentencing in December. The other
worker, Nadeem Mall, is currently serving a six-month sentence
after accepting a plea bargain in exchange for testimony against
Tirado, the worker who actually applied the fatal, illegal
restraint.)

According to the Times Union, Tirado ranked fourth
for top overtime earners at O.D. Heck, and 18th among his
23,000 colleagues in all of OMRDD for 2006. He worked an additional
1,647 hours, roughly the equivalent of 44 weeks worth of overtime,
last year. It is unclear how many of those overtime hours
were considered mandatory.

These figures are extreme, and the issue of excessive overtime
is currently under review by state Comptroller Thomas DiNapoli,
but it is not the first time the Office of the State Comptroller
has been critical of the Capital District Developmental Disabilities
Services Office, the regional agency that oversees operations
at O.D. Heck. In reports from 2001 and 2005, audits by the
state comptroller’s office revealed problematic payroll management
in the form of excessive overtime.

In both cases the Capital District DDSO response was that
overtime practices would be reviewed, but pointed out that
the district stayed within the overall budget. The 2005 audit
indicates that the Capital District DDSO habitually underestimated
the overtime costs required to service its consumers. According
to the 2005 report, for fiscal year 2004-05, Capital District
DDSO budgeted $867,000 for overtime but actually spent $3,628,747.
The comptroller’s report chastises that this is an expensive
way to staff residences.

Says Carey: “I think it’s an issue of them not hiring enough
people.”

“We
stop the incidents by making people aware that they occur,”
says New York state Assemblyman Harvey Weisenberg (D-Long
Beach), who introduced Jonathan’s Law into the Assembly, “providing
information so people can be made aware to advocate and correct
the causes of these incidents from occurring.” Weisenberg’s
background as a special-education teacher and his experience
caring for his own developmentally disabled child make him
a familiar advocate to New York’s mentally retarded and developmentally
disabled community.

“The
reality is if you’re short-staffed and overworked and something
takes place, the responsibility and burden is on the administration
to know who could and who should be there taking care or providing
for people that they’re servicing,” says Weisenberg. “If somebody
works ten days, double shifts, you can’t tell me that you’re
not aware this guy is burnt out!”

“It’s
a tough day. It’s a tough day. A lot of these are nonverbal,
nonambulatory, it’s a physical job, it’s a mental job,” says
Weisenberg, who has been working to advance legislation for
years that would limit the number of consecutive hours that
a direct care worker is allowed to work, but says these efforts
have been stymied by OMH and OMRDD because of staffing issues.
The unions, as well, have opposed the legislation because,
they argue, the workers need to work double shifts just to
support their families.

“It
becomes a little bit of a double-edged sword out there because
a lot of our members do like to get overtime and have the
additional money that comes from working additional shifts,
but what’s happening in some places is they kind of get excessive,
mandated overtime that becomes somewhat counterproductive,”
says Stephen Madarasz, spokesman for CSEA, one of the main
labor unions organized by state employees.

“We
have to pay people a decent salary for the most difficult
job in the world,” Weisenberg says. “The most difficult task
in the world is being able to care for another human being.
We gotta pay them.”

“You
need to pay a better wage to attract people to do the work
and to keep them, because the real issue is the excessive
turnover rate in the not-for-profit sector, and everybody
acknowledges it. The not-for-profits acknowledge it, OMRDD
acknowledges it, and we hear it from the workers.” Madarasz
explains that the there is regular contact on an ongoing basis
with nonunion members due to the interconnectivity of the
community. “It’s symptomatic of the big issue that there just
aren’t really enough people in place to cover the shifts on
a 24/7 basis. That’s really what it is.”

Weisenberg believes that the key to cultivating a career-oriented
permanent workforce is offering incentives—similar to those
that Berben enjoys—not only by paying a living wage, but also
educational opportunities.

“We
should have college motivation and higher education to be
able to develop caregivers and people that will work with
human beings,” says Weisenberg, who wants to give college
credits to people to volunteer in nursing homes and facilities.
“That is very satisfying and gratifying, and if they make
a decent salary maybe we can bring people into the field.
We have to motivate an interest where people take care of
people.”

“There
are many stories to be told of the wrongdoing that has taken
place because of inadequate staff and money to be able to
provide what is necessary,” Weisenberg says. “It’s an awakening
that we have an obligation in government to do the best that
we can to provide what is necessary.”